Flying by the Seat of My Pants

Another Kind of Awareness

Today being Earth Day I’ll bet you’re expecting a post about that, right? Well, you’d be mistaken. Sorry. Nope, today I am off to a quarterly meeting of the Inter Agency Coordinating Council for my state’s birth to three/early intervention programs . It’s one of those large bodies which meets every three months to discuss the state of early intervention services from every conceivable angle —and believe me when I tell you there are angles I never even imagined existed!

But more important than the mere fact of my attending this meeting, what I really want to share with you is the fact that I am attending. You see, since we took Nik out of school in the fall, I have missed the last two meetings because I couldn’t find appropriate child care and I couldn’t take him to the meeting. I mean, sure he’s cute and all but he is also extremely high maintenance and would be a complete disruption to the very vital work of group.

It sure makes it tough when parents of special children can’t find meaningful ways to contribute to our communities all for want of appropriate care for our kids. I really thought I was going to have to resign from my three-year term; we aren’t planning on putting Nik back into school in the foreseeable future and Niksdad’s school schedule precludes him from staying with Nik. Nik’s medical needs, while certainly not as onerous as they once were, are still great enough that he would require a licensed nurse to provide care. There is a special day care where I could pay to leave him for the day but I am not comfortable leaving him somewhere for an entire day without knowing who is taking care of him and what they are capable of handling should the need arise. Nor do I want to be across town in case of an emergency.

When I brought my concerns to the executive committee of the council, I truly expected to hear “Gee, we’re really sorry, Niksmom. We hate to lose you but we understand.” What I actually heard instead was “Gee, we’re really sorry Niksmom. We had no idea that we were making it so difficult for valued members to participate. How can we support you to feel like your son is well cared for while still close at hand and you are able to participate fully?” I was completely stunned.

After all these years of feeling so isolated —first because of Nik’s medical needs which dictated extremely limited contact with others for two years, then because of the frustrations of trying to find our place in this world of “normal” which doesn’t seem to quite fit most days —well, you can understand the relief and gratitude I felt. It didn’t even matter to me if we couldn’t find a solution; what mattered was the effort.

The effort paid off richly. I am soon going to be loading Nik and a metric ton of his gear into the car and taking him with me to what will be the first of our quarterly meetings together. The state birth to three organization director has rented an extra room in the building and my friend S —who knows Nik well, is going to entertain and occupy my little tornado just down the hall. I can slip in and out of the meeting to start Nik’s tube feeding and give him meds, I will be close at hand if he completely falls apart for some reason, and I am comfortable with the whole set up.

If only the rest of the world were so understanding, so aware of what we parents of our special children have to offer.

well, of course they went out of their way to have you there… AND NIK, too… for one thing, you are so amazing and you have so much to contribute. for another, it’s what’s right for nik. it’s a win-win. once again you inspire me.